You can’t expect to get healing from the place that caused you pain and I know I need space from my family. Not in malice but I need space from my family. This decision has had to come with awareness. Not from a place of anger but from a place of understanding. Understanding that I have to create this distance because it’s necessary for my growth. My growth as an adult woman. I cannot blame anyone for how I feel but I cannot deny how I feel. I feel a sense of shame around them. I always have. I have always felt exposed. I feel my mother has thrown me under the bus. I feel a need to be validated around them, that is not their fault and I’ve always felt not good enough. I love them but I don’t trust them and that’s not a good feeling. So I need the separation, I need space to figure out how I feel. I don’t need the pressure of trying to pretend I’m okay when I’m not or to feel I need to rush to get well. I need the freedom to explore who I am without having to feel I am an embarrassment. I no longer want to feel that emotion but being attached to them, that’s just what I feel.
It’s a strange one but I love my family but I also know that no one has cared enough to find out how I feel. No one has really come around me but they have all these expectations. I cannot live up to all these expectations. I’ve learnt to internalise panic, I’ve learnt to internalise fear but it’s written on my body. I need to find my truth and live my truth whether it’s okay with you or not. For me this existence is no longer an option. For a long time I resisted this process. But the longer I left it, the worse I became until a total collapse, undignified, stripped of self confidence and dignity. I need to sort out my life. I can no longer live this lie. It’s time to face my reality.
I have to always consciously check myself on this because I compensated as an autistic woman by copying others, constantly seeking validation and aiming to please to be accepted. At different stages of my life, I presented differently but the core was still the same. I was always codependent. Through the process of surviving coveted narcissistic abuse my self worth, self confidence and self value has deteriorated to an all time low. Self esteem and self respect is a memory. I have stopped living even before I realised. I’m a zombie who does the bare minimum, clutching at straws because I know I have potential but not really having a clue how to live again. In reality the only reason I clung to life was because of the guilt of leaving my kids. I remember the dark days I used to research euthanasia and the day I lost reason and tied a noose, had my son not cried, reason would have not returned. I hadn’t slept for 4 days and my mind was fried. I remember when I took on overdose of antidepressants just to numb the constant pain and constant processing of my mind. Self care was lacking. My body began to reject food because I starved it subconsciously as my appetite shut down and I usually eat when I’m hungry. It got to dangerously levels where I didn’t have enough energy for the whole day. It affected all my systems. Mental illness is a bitch. It’s a scary and lonely place to be I have better days since my diagnosis now I know what I’m dealing with, now I know who I am. My days are not so dark. Awareness and acceptance is allowing me to recognise the warning signs but I am not totally out of the red. I’m exhausted. I’ve totally lost all structure and my ADHD symptoms are severe. I cannot explain the emotion and feeling like shit feeling. The worthless feeling. The WTF feeling. The total loss of dignity in front of everyone including my children and the outside world. Someone I chose to love all my life and would have laid my life down for, I trusted this person, I gave allowances for this person and they treat me like “someone on road”. Now that’s a mind fuck . Everything crashed for me. I have always struggled but from a very young age I never developed trust. So Ego learnt to protect itself. I stole and bought friends from a very young age and was whipped at home as a form of punishment. Home was a prison for me and school was my refuge. I craved to be popular. I told stories often merging fantasy and reality. At home I sucked my thumb and read novels and became one of the characters. Stealing money for me became an obsession to feed the need for love and validation and acceptance at school. The kids loved me at school. I mean who wouldn’t love a kid with that much money. But then the blackmails started from older kids who sussed out I was stealing and that added the pressure of having to steal to meet their demands. On days I wasn’t able to steal any money, or on days I got caught and there were many occasions like this; after I had been whipped mercilessly at home, I was sent to school and I was a mess and lived with the anxiety of being “grassed” to my parents. I actually lived with a real fear that I could be killed. That was my perception as a young child. So no home was not a refuge or safe place. It was just somewhere I had to be and there was nothing I could do about it until I grew up. I was aware that I brought a lot of the beatings on myself; after all I was a thief and my mother was actually doing me a favour by not exposing me to my friends. She always threatened to do that, I wonder why she never did. Sometimes I wonder if it was a scare tactic to watch my breakdown. That was the only thing that would actually send me into intense fear and panic and melt down mode. I accepted the beatings as punishment. I expected it when I got caught. I understood I was bad but the thought of my friends finding out and not wanting to have anything to do with me then I’ll have nobody sent me into a frenzied panic. I already lived with the realisation and perception that my mother had told her friends and family what a problem child I was. I was sent to many deliverance services some of which exploited a vulnerable child. My friends were my everything, I did everything and anything to please them. I sought affection and validation from others. My brothers I took care of and entered a protection mothering role; not because they were in any danger but because I knew pain, I didn’t want them to know pain so I picked up after them and generally tried to make sure they were not in trouble. We all adopted different coping mechanisms and have presented differently as adults but this is my journey to healing and I can only take responsibility for myself. I also adopted the caring role from a very young age cleaning cuts and bruises as my mother was very squeamish and didn’t do well with blood and gore. I was a capable mini mummy and didn’t mind it. I guess it was a time I could actually be viewed as useful and I had found a place where I could be of use to someone else that made me feel good about myself. Looking after others has always made me feel good about myself maybe because subconsciously I have always felt bad about myself. I was also raised to put others first and with a service mentality. This probably came from my mother’s upbringing. I don’t know too much about her life becomes we never had that kind of relationship and anything she ever said about her childhood always shed her in a heroine light. She prides herself on holding onto God, he hears our suffering and eternity will be a better place if we believe. Her perception of her past is one of gratitude. She is a strong Christian and has always lived a Christian life and tried to raise her children in the Christian faith. She prides herself on her faith and is proudly convinced that this is the only way. That is faith but as I am going through my journey and starting to process my past, I am coming to realise that people use different things as coping mechanisms in their lives as a form of surviving their own demons. As I walk the path, I am coming to realise that the more damaged you are the more damaged your abuser was. My mother was separated from her family at a young age, I don’t know how young and raised in Covent schools. Therefore she was able to give us all the practical tools to survive and still does. Emotionally, things were different in my perception, prayers were her form of emotional support. Physical Punishment was in alignment with her faith but there was the degradation, humiliation, threatening behaviour, verbal abuse, she had a fear of sexuality or me having one which was an irony because I was being sexually abused from a young age. My mother and I have a warped relationship. I know she loves me to what her idea of love should be because that’s all she knows love to be. Going through all my mental health struggles, I mostly did it by myself and was so ashamed when I had breakdowns because I could see it and hear it from my mother that I needed to quickly get up and get on with it. So it’s taken a lot of courage and a lot of years and sheer desperation to conquer shame. Shame has been ingrained in me from a very young age. This is what keeps us in bondage. Shame of what people think. I let it fester and like a cancer it has spread over my mind and body to the extent I cannot function. I have lost skills I acquired along the way.
The diagnosis of Autism finally allows my life to make sense. Pathological demand avoidance makes sense. I have developed extreme avoidance and found ways to manage myself subconsciously.
After the breakup of my marriage which didn’t make sense, I needed the separation to understand what the fuck was going on. I needed space to reflect. Living together under those circumstances especially with the latest betrayal of leaving me to go and have our child by myself, going to work instead because we had an argument finished me. That was the nail on the coffin I thought but the way he tried to absolve himself from this fuck up was the start of the what the fuck. This man had never been there for the birth of any of his children. I had 3 by him and another woman had 2. He totally separated and alienated both families and was happy with the alienation between his family and me. I slowly detached from all my friends because it was easier and my time was spent trying to work to keep the family afloat and quarrel and him not pulling his weight and I was always in a state of confusions. He played mind games. I’ve only just found out about narcissistic abuse so it makes sense now, but in the heat of the moment his mask used to slip and it used to leave me confused. Then he would straighten up again and be all sugar and light. It was during our separation that the demon appeared and the demon appeared only because he had been caught red handed. I didn’t know this person. My head was fucked with the realisation that I had been in love with an illusion. This man treated me like the shit under his shoe and degraded and humiliated me in front of everyone and anyone that cared to listen including his new flame. I had recently had a child and became pregnant very quickly with another, his father was dying of cancer and we were separated. It was a difficult pregnancy which I was not sure I wanted to keep, not because I didn’t want another child but because I didn’t want another child for him with all the drama it would bring. I had a consultation for a termination and the lady said after o had explained the situation. What would you do in the ideal world whether he was around or not? I said keep my child and I walked out of there knowing I had made the right decision. It was a high risk pregnancy and I was bleeding but I had regular scans and everything was still intact. I told him at his fathers funeral when he told me his son was going to be a dad. As his father got sicker and sicker, he kind of started to distance himself and I allowed him his space. My rationale was he needed to be with his family and grieve. When I told him about the pregnancy, he responded with a it can’t be mine but he would come and discuss. He never came and I didn’t pay him no mind. Babies when they are born don’t hide. Unfortunately my waters broke at 18 weeks. Too much stress on my mind and my body. He was called to take care of the kids; he offered to be there with me through the trauma. I was grateful. He was kind but he was also shifty. My intuition said “another woman”. Subconsciously I must have known he is a pathological liar because I’ve always gone detective on him and every time I listen to my intuition and my intuition has always been right. So when I went detective on him, he was indeed seeing another woman. I was not mentally prepared for this and that’s when the mind games started in earnest. 4 years ago wow. I didn’t have a clue in the world what I was dealing with. I’m only beginning to understand narcissistic abuse. I didn’t have a clue with what I was dealing with a parasite who sucked me dry until I was able to break free. With a lot of damage and a life that’s completely fallen apart. My survival instincts have kicked in and I have developed extreme avoidance to life. My systems have shut down and I need to fight against my natural instincts if I have any chance or hope of recovery.
I have these pages to fill but where do I start? I carry with me a truck load of luggage and believe me when I say at 40 years of age I don’t travel light. When I think back to when I started to question, sometimes I wish I had just left things alone. It was easier to live in ignorance hence the phrase “Ignorance is bliss”. But that’s what happens when you are in survival, your brain buttons shut down in order for you to deal with the trauma you are facing. You may not even recognise you are in an abusive situation, I know I didn’t. My life didn’t make sense but I would have never in a million years equated my relationship as abuse by a narcissist. It’s only after the break up, the “beast” appeared in full view when the mask was dropped and this was what really caused me to break down. I didn’t recognise this person. My world collapsed. It’s still shattered and with shaky fingers. I keep picking pieces up only for some pieces to drop again because my hand is not steady. I feel like after 4 and a half years of separation and back and forth, I am still uncovering layers. To be fair, it’s only 4 months ago, the final goodbye happened and this time I didn’t even have to ask him to leave. He knew I was done. My energy was different. It’s taken the Divine himself to reveal reality and this was started from a chain reaction of me speaking into existence. My life in 2011 was chaotic and on a downward spiral. I got married to the “man of my dreams” in 2010. We had 3 children, one was my daughter and he moved in to be a family in 2006. We never made sense but I was still living this fantasy that we could make our relationship work, so at that period I was hitting rock bottom again with the pressures of work and home. I confided in the clinical psychologist at work how bad my mental state was. I told her I was waiting for my last child to turn 18 and I would kill myself. I was working on an intensive care unit at the time, I also had a car crash which meant I wasn’t able to work clinically. I was in excruciating pain but I wasn’t really given a role, a little bit of this and a little bit of that; so my structure was out of sync. This greatly added to my anxiety levels and sense of self worth. I didn’t know I was autistic at the time but now when I think about my time and all the struggles I had in intensive care, the knowledge that I am autistic puts everything in perspective. The structure suited my OCD brain but I had sensory struggles therefore the migraines and shut downs on my days off now make sense. I have ADHD so while I really enjoyed the practical side of things and my problem solving brain thrived, I also struggled with timekeeping, time management and i now understand my struggles with documentation. I thrived on the 1:1 nursing which also explains my preference to acute settings. I could deliver high quality care in a hyper focused manner. I struggled with hand overs and often went home beating up myself about what I hadn’t done. It bugged me to receive a patient from theatre just before hand over and hand them over before I had settled them. Reflecting for me helps me process situations I didn’t understand at time and a helpful piece to the puzzle. I am an unfinished piece and different pieces are being found as layers are uncovered to help me put myself back together again. Every experience was designed to mould the warrior on the other side. This mantra is my anchor because the journey is shit scary but I remind myself how brave I am to even attempt to agitate Pandora’s box. I’ve gone one step further and opened Pandora’s box. Inside, I find a stack of boxes. Where do I start because as I pull out a suitcase, it’s clear to see that there’s a graveyard and I am realising to more I shovel, the more there seems to have to shovel.
Opening Pandora’s box was necessary for me. I remember the day, I was a home deteriorating during another break down. I’d sit and think all day, my brain was confused. And in a panic I’d start frantically cleaning before my husband got home from work and became moody for the place being in a state. No one really understood how I was feeling. I was struggling to work out what was going on. I remember I was sweeping the living room and I was thinking about my dual lives and who the fuck I was. It was actually the first time I started to give it some thought after my husband in an argument threw in my face, it was like I was living 2 lives. I think I have delayed processing because I will think about something long and hard and dissect and analyse until it makes sense to my brain. That was the beginning of me recognising and admitting I was a pathological liar. I had created a fantasy life at work which suggested my life was perfect, looking back now I cringe because I didn’t even put on a convincing act. The only one who probably didn’t see through my facade was me. And that’s because I didn’t intend to harm anyone. This was my coping mechanism developed from a very young age. I can talk about it now as I understand myself better through the lens of a childhood trauma survivor and an autistic woman in a mask. However while this knowledge frightened me, I sought to engage with the mental health service and I had an assessment for psychotherapy. This was not my first contact with the mental health service. On 2006, I was hospitalised as a voluntary patient after I had taken an overdose and Self harmed. I also explained my dual lives and I needed help to understand this. I was deemed suitable for psychotherapy and put on the waiting list. Unbeknown to me at the time, the psychologist/ psychotherapist at the time put down a diagnosis of EUPD. This was revealed to me for the first time in 2017 by a community psychiatrist who was in agreement with this diagnosis. My experience of the mental health system has been appalling including treatment by my GP. I have also had to tread carefully because I have come to realise that people with mental illness have no rights especially when they are under section so true to my autism subtype pathological demand avoidance, I have skilfully used extreme avoidance in most situations I find frightening. Due to my upbringing and background I have learnt to internalise pain and fear but like every compensatory mechanism when the system is not reset to equilibrium, everything grinds to collapse. I have finally found who I am, I am an autistic woman who was required to be normal but this was my abnormal and the process of conformity in a very rigid household/ culture/ religion I acquired many demons. Needless to say I was naive in thinking from just acknowledging something was wrong, it would be a quick fix but years later as things reached rock bottom, now I’m out of the flames and I’m processing again, it’s finally dawned on me, this is no quick fix. It’s sad to admit but I’ve been abused all my life and it’s not a straight forward kind of abuse, it’s not black and white. Reflecting is taking me back beyond when I met my husband, it’s taking me back to teenage years and I have flashbacks of early childhood, partial and full memories. I started writing because I should be in therapy. My head was combusting and writing helps to unclog. As I pour out my pain, the Divine rewards my courage and sends me the right people even if it’s just for that day. I cannot do this alone. A kind lady signposted me to Brené Brown today and I listened to 2 TED videos; Listening to shame and The Power of Vulnerability. The messages resonates with my soul. The Divine has already laid the foundation because in my turmoil after I had reached burn out, I heard a voice loud and clear, “in order to live you have to conquer shame”, I had to write but it was the hardest thing to do, put out my business. I started my Instagram page using an alias Jai Aton (facebook), with an instagram account @identity4422. I had to write. The more I got the yuk out I started to feel my cells revive. My 40th birthday signifies rebirth. I revealed my authentic self with images. No more shame.
Shame needs 3 things to grow: Silence, Secrecy and Judgement. However if you put Empathy with Shame, Shame cannot survive. The two most powerful words when you are in a struggle is “Me too”. (Listening to Shame- Brené Brown). I can testify to the power of these words for in sharing my story, the people who have reached out with a me too, have extended an invisible hand of support to remind me that I am not alone and there’s something about strength in numbers when you are united with a common goal. I am reminded recovery is possible and on really dark days I am not alone
I’ve always had a very strange relationship with food since I remember myself and it was mostly dodging eating something or running away from the smell of something. And I wasn’t a child that was fazed by the if you don’t eat it you’ll get nothing else. Well I would happily starve, I don’t want it thank you and so that’s probably some of the foundation. No one knew at the time I was autistic. I was just a strong headed kid who liked her own way and didn’t like to do as she was told. As an adult I think of the things I liked as a child if I had my way and it was very restricted by I probably had nutrition from every food group and I liked what is now know as the superfoods. Sour sap is now classed as a superfood and I grew up in Nigeria where we had the tree in our compound so I lived off sour Saps and mangoes and guava. I never liked pawpaw (papaya), I can’t tolerate the texture. My taste has expanded as I’ve become older because I guess I haven’t been forced to consume anything under duress so I have slowly tried new things and found it is not as bad as my mind believed. As a teenager, I probably started using food as a form of control, it was the only thing I could control when everything else is a mess and guess this has spiralled into adulthood. As the pressures of adult life mounted executive dysfunction became worse and I started to forget to eat and they had started the downwards spiral in the past when I was not aware. In times of stress my body shuts down. The relevance of my story is that I have to be conscious of my triggers in order to change my responses to them for change to occur. When you don’t walk in consciousness, you have a greater chance of reverting back to your old coping mechanisms. This was my reason for stopping my Ritalin when I did when my body collapsed in January. My body and mind was going through extreme stress and with the addition of the side effects of Ritalin, I didn’t stand a chance. I lost 15 kgs in a month and I was getting to a dangerous place. It’s harder to comeback from that dangerous place (ed survivors will know this so well). My blood pressure was starting to be affected and seeing as no medical professional felt I was a worthy cause, I had to realise I was a worthy cause. I stopped my Ritalin in order to focus on feeding my body. I am far from giving my body the nutrition it deserves but I am proud of myself for not allowing it go to dangerously low levels this time. My mind needed building and you can’t get your mind strong without food. Your chemistry goes out of balance when you starve your body. My end goal is to be as healthy as I can be without compromising taste because I will like to begin to associate food with as a wonderful experience which I also partake in. I’ve never really understood the concept of dieting, low fat foods ( it changes the taste for me), I’d just rather go without so I guess I will have to work with healthier versions of what I like, a better structure with eating including remembering to eat whether I’m hungry or not, regularly. I am aware of the beast within me and I will shame the beast because I am worthy. I am worthy of living a healthy life and my body and mind are worthy of nutrition.
I am thankful that every time I start to lose faith in humanity again, the Divine reminds me there are good people again. I have been in a funk for a few days. Well more than a few days. Since my daughter’s last competition, I’ve been down in the dumps. I had a few days of panic about my current situation and I had to sit myself down and rationalise that I have got this far by faith and I have to keep believing especially on days that the demon of panic was rearing it’s ugly head but I think the other thing that really got me down was seeing people who I thought were friends show their asses for who they truly are and let their masks slip. And for me that’s all it takes for me to know what time of day it is and retreat to my lane. But it sucks it’s sucks when you find out that the only one in the relationship with the friend status was you. The other was keeping their competition close in order to gain information to use to their advantage. People who get close enough and build enough trust where you allow them to see you vulnerable. People who will use their own ropes to hang themselves because their tongues become loose when they are intoxicated with liquor, jealously and hate. Then you sit back and watch the soap opera and it becomes really clear that you have been playing the part of the joker. I’ve had my grieving period and now the joke is on them. I’m out and I’m wiser I know what time of day it is.
So that’s why today gave me joy. I spent the day with a friend. When I say a friend, this girl is my twin flame. I met her 13 years ago, we both brought our 3 and 4 year olds to a ballet class a local church and she said, “you were the only one who spoke to me”. I said to her “I had reason to speak to you. You needed help with your buggy”. And we left the ballet and my daughter started another ballet school, a few weeks later, she enrolled at the school by coincidence. We left ballet and started gymnastics; a few years later her daughters enrolled at the gym. And we start and lose touch but the universe always manages to bring us back together. We are both of separate journeys but it is amazing how parallel our journeys are running. Even though we have different stories, our experiences are similar and we are both in a place that we are starting to take personal responsibility for our recovery. I have been speaking to her about how I feel and she has given me many words of encouragement. She is a very talented woman who needs to belief in herself because her future is bright. She has everything it takes to make it as a star and she has the heart of gold to match. I am humble to know such a beautiful person and I know her journey so I am extra proud of the woman she has become. I am so excited for her future.
Are she has to do is believe because she has all it takes. I have agoraphobia and social anxiety so I only go out of my home for a purpose of absolute necessity. My self confidence is at an all time low and these are things I need to work on. I am aware now that I have always relied on another person to navigate the world and it makes sense that this is how I coped as an autistic woman. This will not be necessary if people where authentic and meant what they said but I am starting to realise that I have always needed someone I trust to translate other humans to my understanding. What did they mean by that? And so on. It was better when I was younger but as people grow, dynamics of friendships change and even people you thought you could trust change. This is a real challenge and frustration for me as a woman with autism because no matter how “normal” I look and eloquent I sound, that naive part of my brain will believe you literally and not understand you are just being polite. When I start to trust you, I drop my guard and I always get had. That’s why it’s so lonely. I think that why autistic people stop trusting and become loners because they are tired of people fucking them up. But it’s nice on a day like today when I spent the day with a friend reminiscing about the past and my decline because I began to dance to the tune of the piper and live up to other people’s expectations. She said something powerful today which rocked my soul because it was the absolute truth. I said “You gave him the kind of love you should have given to yourself”. That is what I need to do if I give myself the kind of love I gave him, the sky will be the limit and I was ooze love. I understand now why he couldn’t reciprocate because you have to be love to appreciate that kind of love. Thank God for awareness for me. So I rejoice in today. I have spent a lot of time at home with the highlights of my day some days posting on Instagram to keep my energy high and focus on keeping my mind strong and change my mindset. Along the way I started to panic and wanted to hurry things up abit. This is learning for me. I’m learning to surrender so when I step out of line, it’s easier for me to recognise. I have to step up my game now my mind is stronger. I have to venture out and this causes me great anxiety. My Divine will never give me more than I can bear, he has sent my friend back in my life at a time we can support each us without either of us being dependent and I think that it important to the both of us. We are both free spirits and we need to feel that independence. “Humanity is like the ocean, if a few drops of the ocean are dirty, the ocean does not become dirty”- Ghandi . Never lose faith in humanity for every 5 rotten apples out there, life has taught me that there is 1 genuine person. Just do you and don’t let anyone change you. Have your rant, feel your anger, learn your lesson, forgive and release them from your spirit and walk the fuck out of there singing praises you are wiser and know better now.
I’m stuck in a rut. This is how I’ve been feeling lately. I’ve tried to write this pages so many times and it always goes back to where do I start. There is so much to say, there is so much to sort when everything has disintegrated. That’s literally what my life feels like. For the last few years it feels like I’ve watched it in slow motion but during the process of self reflection the process of unraveling started even before that. I have a few unpublished posts that where written in desperation at a time I just needed to get shit out of my head then I started an instagram page: identity4422 on 30 January 2019. I had to fight my demons. 22 January 2019 everything came to a halt for me. My body and mind became exhausted. My soul was exhausted and my body went into complete shut down and my mind was manic. My body and mind were so stressed that for the first time in my life I lost verbal communication. I could not talk. My body was riddled with a kidney infection and my limbs refused to work. I was experiencing what is known as autistic burn out. Prior to this I have been facing very stressful situations with little or no help from medical professionals who have a duty of care to help me. I have had many battles with my mental health through my adult life; including battling with my personal stigma of the disease and society’s stigma towards the disease. I have also been battling with the stigma of being a health care professional living with a mental health illness, knowing how these group of patients are viewed by my colleagues. I have discovered that when people don’t know you are affiliated to a cause, they are able to speak openly about their prejudices and biases with no fear of repercussions or fear of having to put on the professional script. I have also been battling my expectations of the current medical systems and I am currently struggling to understand why I am currently in the situation I find myself. I have been managing severe depression and anxiety more or less by myself with little or no input from medical professionals who could help me. For what ever reason, I have been bounced from pillar to post. I have had to pay for a private diagnosis of Autism and I was also recently also diagnosed for severe ADHD; also a private diagnosis. For the last 5 months, I have been sporadically managed over the phone as a goodwill gesture by the psychiatrist that diagnosed me for ADHD. This man has made himself available at crisis periods because he is aware that there is no input from my primary care providers. It’s almost like I’ve been left to rot. Myself and my family. And it’s not okay. When I think of the fight ahead of me sometimes I get overwhelmed and the thought of not waking up in the morning seems more enticing but I don’t have that luxury. I don’t even have the luxury of ending my life because I will leave 4 hearts beating with the same pain I am trying to escape. But at the same time, I am sick and tired of being sick and tired. I am tired of living like this. Does anyone know what it feels like to forget what it feels like to live? I’ve completely lost my structure. I have executive dysfunction and I have totally lost structure which I heavily rely on. I have totally lost my confidence, my self esteem, my self worth, I am at an all time low. I actually have been blagging it for a long time and truth be told I hate what my life has become including how I’ve let myself go. Self care is lacking and I just hide myself away at home not really achieving much but too scared to go out into the real world. I have cut myself off from the real world (in hindsight, that’s how I’ve lived most of my life; fantasy, mimicking, copying) because now I know my truth, I am aware that my prior existence in the real world was based on fantasy. I am a 40 year old black woman who navigated life without an autism diagnosis. I recognised I was autistic when in my professional capacity, I recognised symptoms and my struggles in this client group. I could have wept with elation when I started recognising my struggles in these females and suddenly my life began to make sense. At last I felt I could work with my GP and finally a magic wand will be waved and all will be well in my life again. Again this is my naive self and mind always ready to romanticise a situation but as most things in my life reality always gives me a rude shock. I owe it to myself and my family to get better and get the help I need to get better. My fear and anxiety of professionals is another reason I don’t really engage with them. I am fully aware of the power relationship in the doctor- patient relationship and how professionals have abused their position either due to their egos or lack of understanding. As a professional one of my major issues with the system was its fragmented delivery. This in my opinion is due to the lack of understanding of policy makers in not taking into consideration how mental illness affects the family unit. While the current mental health campaigns places greater emphasis on prevention and early intervention, in reality, the current systems are not designed to promote recovery. And when you actually look at it, there is no money to be made from total recovery. The system is designed to contain and treat symptoms. In treatment of symptoms, the pharmaceutical companies are able to find more research into better ways of keeping symptoms at bay; longer and longer. While I recognise that at present I need medication because I am a place where I have fought for so long that as part of recovery, I have to treat the chemical imbalance with medication until I am in a better place to substitute with healthy alternatives. I am even content in the knowledge that I may have to medicate for the rest of my life if needs be and that too is okay. This has been a journey for me. A process; a process of self discovery, a process of self acceptance, a process of finding my identity and conscious awareness. A journey to finding and living in my purpose and falling in love with my authentic self. I have fought this process a long time and the only thing I achieved was a broken mind and body. So it was wise to surrender. Surrender to the process and learn to meet and love my authentic self. I have decided that it is within me to change my life and I will try my hardest one day at a time. I am not happy how my life has become but now talk is cheap and I have to do something about it. It’s called personal responsibility so tomorrow I will register myself to a new GP practice. I have health issues that need attending from since I had my son 4 and a half years ago. I will document my fight to health and my fight to be treated like a human being. My current experience of the health care system is that I have been treated less than human and I have been left in compromising situations due to the lack of care; the worst being when I had actually tied a noose at the lowest point in my life. Had my baby not cried at the right time, logical would have not come back and my story would have been told from someone else’s perspective. This is my story and I get to tell it and in telling it I get to write the ending. I am worthy of happiness. I am worthy of a healthy mind and a healthy body and I am worthy of love. Yes even autistic me. I am worthy of love. #mentalillness #depression #anxiety #autism #actuallyautistic #newdiagnosis #ptsd #midlifecrisis #selflove #mentalhealthwarrior #blackmentalhealthmatters #blackandautistic #consciousawakening #processingdiagnosis #righttotreatment #humanrights #autismact #poortreatment #selfadvocacy
Good evening ladies. I’m at crossroads in my career well I’m at crossroad with everything in my life at the moment but I will like to address career today.
I am a paediatric nurse with 16 years experience. I love nursing children. However the politics and everything else that came with it really put me off. I had to leave clinical nursing for family balance and I have been working in commissioning. I have become so frustrated with the system that I no longer want to be a part of it. My job entails assessing children who have health needs over and above is being currently provided by the NHS. I recommend the support packages needed to support their health and sit on a panel with social care and education (who have also assessed as required) to request funding for the recommended packages. I see the suffering and understand the suffering of families ( because I am those families in my private life) and listen to the responses and views of the professionals on the panel. I see how much money is being squandered on reaction to crisis instead of investment to save in support systems that actually make a difference. I see support systems created by people with good intentions who haven’t got a clue that their amazing ideas are actually not what the service users need or they will never engage with the service because the lack of understanding of the service users needs has made it not fit for purpose. I have lost all belief in a system I represent and I don’t know what to do about it.
I am trying to be rationale and not walk away from my job as it is contract and that ends in March. Financially I am not able to leave my job and doing so will make things worse. So I am trying to find a plan that will keep me going knowing that I will eventually be able to do something that truly makes a difference.
My thoughts were to try and create a service that supports women and females on the spectrum especially women with late diagnosis. I am one of those women and Autism is not one of my problems. As an adult woman most of my problems are the traumas I live with that developed as a result of not being supported as a person with autism and my struggles to compensate for my limitations. That is individual to most people with autism that’s why we don’t all turn out the same. We are individuals, we are people, we are different. You know one autistic person, you know one autistic person. You get the gist.
I am thinking of sending out a survey to as many women with autism as I can. The criteria will be late diagnosis 18 and above so all adult women.
I will like to know if they had access to a support service what support would they require to lead a functional life
What does a functional/ fulfilling life mean for you?
Secondly what are the issues women have struggled with that led them to seeking diagnosis
Would you be interested in helping with my survey please? I need to do something and I need to start somewhere. I apologise for taking up your time.
I’d appreciate it if you are able to show your interest in the comments below.
I will also post in the ADHD group as well because we coexist in many cases and it will make sense to have a service that includes both.